>The Spirit Catches You and You Fall Down

January 12, 2011

>After repeated recommendations from Sophisticated Dorkiness, I found a copy of Anne Fadiman’s nonfiction book The Spirit Catches You and You Fall Down (A Hmong Child, Her American Doctors, and the Collision of Two Cultures). It begins as a story of culture clash between immigrant Hmong parents and arrogant American doctors, and tells both sides of the story without blaming either one.

As I read it, I got angrier and angrier. I’m an upper-class, well-educated American who speaks good English, but during the times that I’ve been subject to the dictates of our medical system, I’ve experienced some of the same bullying that Fadiman attributes mostly to cultural difference. Doctors are interested in lives, not in souls, she demonstrates, using one doctor’s own words on the subject. It’s bending to the needs of immigrants to do something like allow family members to stay in the room with a critically ill child. Why? Why do most Americans routinely knuckle under to the demands of doctors who don’t see us as people, but as broken body parts?

I am the survivor of five hospital stays, three for knee surgeries and two for childbirth. I know first-hand how demeaning it is to be treated like a purely physical object who is required to obey every recommendation or be labeled “noncompliant.” I was consistently bewildered to hear laments over “drive-through delivery,” because I was forced to stay in the hospital longer than I wanted to (12 hours for my second birth) and not allowed to have my baby with me except at the whim of the nurses.

Perhaps you think that going to a hospital should require me to surrender my will entirely to modern medicine and its dedication to health at any cost, without any regard for quality of life. I would not agree–and as a result, reading The Spirit Catches You and You Fall Down (the title is a Hmong description of epilepsy) made me very, very angry indeed.

Let’s take what happened to Lia Lee, the “Hmong child” of the subtitle. Her doctors got frustrated because Lia’s parents, who speak no English and in fact have no written culture, were not carrying out the instructions that were written in English on the various medicines they prescribed, medicines that had–as so many do–unwanted side effects, both physical and behavioral. So what did the doctors do? They had Lia taken away from her parents and put into foster care!

Fadiman quotes the doctor responsible for this outrage as saying “I felt that there was a lesson that needed to be learned….I felt it was important for these Hmongs to understand that there were certain elements of medicine that we understood better than they did and that there were certain rules they had to follow with their kids’ lives. I wanted the word to get out in the community that if they deviated from that, it was not acceptable behavior.” Lia’s parents did not see their child “for more than a month,” and they weren’t even told where she was “for several weeks.”

Fadiman tells story after story of the arrogance of modern American health workers, from the ones at a refugee camp who “failed to win the cooperation of the camp inhabitants because they considered the relationship one-sided, with the Westerners holding all the knowledge” to the California home health care worker who told the Lees not to give a quick-acting laxative to their incontinent and brain-dead child “because if you keep using the medicine, then Lia will always have to have the medicine, and that is a bad thing.”

Only after their “culture of biomedicine” fails to cure Lia do her American doctors seem to have any sense of perspective about what they’ve done to her. Her chart notes that after brain death, she no longer has seizures, and her soft food diet has “cured her obesity,” prompting one of her doctors to observe that “she was real healthy….She was the healthiest she’d ever been. She was just perfect. A perfect vegetable.” Another doctor observes that she had become “just the sort of patient nurses like” because “she had metamorphosed from a hyperactive child with a frightening seizure disorder and inaccessible veins into an inert, uncomplaining body who would probably never need another IV.”

Fadiman tells some stories about medical professionals who succeed in communicating with and treating Hmong patients, like a man who was hospitalized for an infection and was upset about the “routine admission form” question about whether he wanted to donate his organs if he died. He clearly demonstrated unease in this situation; how many of us would have been more quietly upset, filling out such a form for ourselves or a loved one?

Stanford Medical School, Fadiman says “is trying to bring back what has been called the ‘whole doctor–whole patient’ model, in which the doctor brings his or her full humanity…to the hospital, and the patient is viewed as a complete person (not just the appendix in Room 416). This model is nothing new; in fact, it is what all doctors used to be taught.”

In so many areas, we’re learning that science alone is not the answer to all our problems. The popularity of Michael Pollan’s books, for instance, is one indication of our dawning awareness that a narrow focus on nutrition has not been effective at improving the eating habits of Americans.

Medicine is only one of the difficult topics Fadiman addresses in The Spirit Catches You and You Fall Down, but it’s the one that I obviously reacted to most strongly (here’s a different review). Do you think I’m over-reacting?

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>No. My one hospital stay (apart from the births of my children – both incidents were much happier than yours) after wrist surgery was nightmarish. I was in such pain and yet the nurse refused to give me more medication because "it wasn't time yet" and I doubt she believed I was in pain. It was clear I was being a troublemaker. Sigh.

>No, I don’t think you are overreacting. I’ve had seven major abdominal surgeries, and finally learned after the fifth one to be a very strong advocate for myself. All anesthesias make me violently ill to the point of throwing up. For the sixth surgery, I found my voice and made it clear that the pain scale (which is another utterly stupid thing, but I’ll save that for a different rant) was useless to me—the nausea was by far worse than the pain. That was the first surgery I’ve had where I was given preemptive anti-nausea drugs (the kind normally reserved for chemo patients) and was asked to rate the nausea in the post-op room rather than the pain. It was also the first time I didn’t throw up post-op which was a huge relief.So no, in my opinion you aren’t overreacting. However, the system won’t change if we don’t find our voices—and I don’t necessarily mean our indoor voices.

>I have the same problem with anesthesia – and so does Dusty which I think is why she had such a hard recovery. It makes me sick. This is why I insisted on non-medicated births (and luckily had no complications that changed my plans). I knew I could better bear pain that was of short duration than to go through all that PLUS the effects of anesthesia.

>FreshHell, I have that trouble with anesthesia too, and when I've talked to anesthesiologists about it, they invariably tell me it's because my body isn't used to taking drugs (legal or illegal) and so reacts more strongly. I've always suspected they overdose me because it's based on body size and I'm so big, but the two of you are small women, so that's probably not the case. Anyway, the point is that it can be so hard to get an anesthesiologist to talk to you–much less listen–before figuratively clubbing you over the head!

>I don't think you're over-reacting at all. I had cervical cancer in my mid-20's and had to fight my doctors so that they wouldn't perform a "preventive" hysterectomy. I was spoken to as if I were a mildly retarded child and made to sign a form that basically said, yes, I know they recommended this and I am stupidly refusing. The reasons I refused were based on good research on my part and my innate mistrust of a medical system whose m.o. always seems to be to shoot a cannon at a mouse, if that makes sense.As you know, I am reluctantly taking a 10-day course of antibiotics right now that was prescribed to me over the 5-day alternative mostly due to my age. Pisses me off.

>Lass, the "spoken to like you're a mildly retarded child" thing is what makes me angriest!!!I'm pretty sure you're right that the antibiotic you're taking is a cannon when a pistol would have done it. But I've read enough stories about misuse of antibiotics to be wary. Physicians use those stories as an excuse to be even more heavy-handed; I think what they're missing is that it's a symptom of patient doubt that they're the gods they imagine.

>I don't think you're overreacting either. A lot of medical professionals have serious attitude problems. However, I've also had some excellent doctors and nurses, plus my husband is a medical professional, so I can't lump all of them together. I definitely believe in sticking up for yourself. After my first child's birth, several aides seemed to be on power trips, denying me formula because I "wasn't trying hard enough to nurse," etc. She's almost 14 and I still get angry when I think about it. That book has been on my to-read list for a while but now I don't know if I could read it, I'd probably just throw it across the room in frustration and anger. But I'm glad you reviewed it.

>Karenlibrarian, you're right, I am generalizing. It's the "power trips" that most concern me. I know some medical schools have courses in ethics now, and I wonder how the issue of absolute power (which "corrupts absolutely") is addressed. If it is.

>This book haunted me for months after I read it. It was my first introduction to Fadiman and it took me a long time to realize that it was the same Fadiman who wrote one of my favorite little books about books, Ex Libris. It's funny, though, because I was much more fixated on the cultural issues than the medical (coming at it from training in ethnomusicology/anthropology), I almost feel like I read a different book and may need to go back and reread it to see what I missed.

>Harriet, the best part of the book is the careful way she evaluates cultures–and points out that it's hard to see cultural differences if you're blind to the assumptions of your own culture.I wasn't fair to the book; it made me angry and the post is a very personal response–as most of my posts are.

>I don't know if you're overreacting. My one hospital stay as an adult was for childbirth. I was well taken care of, could have my baby with me as much as I wanted, or could have him soothed by someone else if I was in pain/asleep. They responded pretty promptly when I wanted some ibuprofen-level painkiller, and they in general took good care of me. I had a lactation consultant come in two or three times in the 24 hrs we were there, for some advice and general encouragement. She only came more than once, though, because I asked the nurse to call her; she didn't show up uninvited to nag at me.They let us have more people in the room for the birth than is officially allowed, too–because my mom managed the 7-hr drive to join us before my labor ended. Really, everything about my hospital birth experience was positive. I felt well taken care of; I held my baby for a good long time (an hour?) right after delivering him. My doctor was pretty cool, showing me the placenta afterwards, and we oohed together about how amazing it is, a disposable organ that is grown fresh every time you need one.

>You might be interested in the review posted on Amazon by Dan Murphy, one of the physicians involved:"I was one of the physicians involved in the care of Lia Lee. I'm referred to in the book as the physician that first diagnosed Lia's spells as seizures. Neil Ernst and Peggy Philp, the principal pediatricians in the book, were and are good friends of mine. Having experienced Lia Lee's saga personally, and then having read the book, I can only refer to Anne Fadiman's talent as astounding. Anne walks an incredibly fine, and very well documented, line as she describes what happens when American medical technology meets up with a deep and ancient Eastern culture. My team (Western medicine) failed Lia. Never have I felt so fairly treated in defeat, and never have I felt so much respect for an author's skillful distillation of a tragically murky confrontation of cultures.ADDENDUM (8/8/09) I wrote the above review almost a decade ago. The experiences that I had during the events described in this book have continued to guide the way that I practice medicine. The Spirit Catches You has become a true classic in the medical and anthropological fields, being read in college, medical school, and nursing classes throughout the United States every year. This speaks to the enduring quality of the work that Anne Fadiman did in a book that remains unique in the skill with which it was written. The story it contains remains fresh and astoundingly relevant to the practice of medicine in particular, and cross-cultural relationships in general."

>Karen, I think OB care has changed for the better in the decade plus between my kids and yours. Hospitals woke up to the fact that women were making choices, rather than just going to the nearest place. My friend Alison didn't even have to give birth in the hospital, which I think is progress.And it's great that this book is being read in medical schools. I hope a few future doctors take it to heart generally, rather than only in cases where the patient speaks a different language.

>Just to be contrary…When my daughter was born 16 years ago, she, my husband, and I stayed together in a private room. The only time she was out of my sight in the 2 days we were there was when the aide took her from the room to do a heelstick. Overall it was a good experience, and I especially remember the nurses with great fondness and appreciation.One can always give birth somewhere other than a hospital, but it's still the safest place for the woman and fetus/baby.All that said, I'm no medical establishment apologist. There are too many doctors who think they are infallible and too many consumers who buy into that and don't voice their concerns or desires.I don't know if you're overreacting. But it sounds like this book was written a while ago, and medical and nursing schools have been aggressively addressing cultural bias issues for at least the last 15 years. Perhaps this book is no longer an accurate representation of standard care.

>Readersguide, one of the other things I didn't say about the book is that I had one of those "not another baby boomer book" reactions at first, with all the details about Vietnam. I did manage to get over that.

>PAJ, I think you're lucky, smart, and were living in an urban area when you had your baby.The knee replacement surgery I had at the end of 2008, when I started this blog, is one of the experiences I'm thinking about when I get angry about medical care.

>I've had several good experiences with medical professionals, but I've also had more than a few experiences ones that I still get really angry thinking about. I've also heard SO many infuriating OB-related stories from people I know.I'd never heard of this book before. I want to check it out.

>I assume I am the Alison you're referring to, right? Unfortunately, while I was "allowed" to have Calvin at home, technically what I was doing was illegal. Or not specifically legal (which is an oddity of Ohio law). And, I had to completely outside the medical establishment to do it, and suffer a truly condescending lecture from my OB (who had previously treated me like a "mildly retarded child) in the process. It brought me to tears, and I dumped him as a Gyn as a result. So, no – definitely not an over-reaction. I've had a few good interactions with doctors, but not many, and I feel like our current system of medicine makes that worse.

>Melissa, it's a very good book. As Kim (Sophisticated Dorkiness) has been trying to tell me!Alison, yes, you're the friend I was referring to, and I knew it wasn't easy–although I don't think I'd heard all the details about how hard it was. The legalities are a big thing in OB because of malpractice suits, of course, so there's no use blaming doctors.

>As someone who got mysteriously ill in high school and was subjected to every test ever (and regularly told I was making it up/a hypochondriac) before they figured out it was fibromyalgia, I stay as far away from Western medicine as possible. If I broke an arm, I'm sure the doctors could fix it, but anything complex or not immediately obvious is just hopeless.And having seen The Business of Being Born, if I ever get pregnant, I will be looking into alternatives for labour.

>Oh, I forgot to add one of the things that makes me REALLY angry: the fact that OB/GYN doctors essentially won't prescribe hormonal birth control unless you submit to a yearly pelvic exam. To me that's such an abuse of power, even if they think it's for the best.And just to clarify, I've had a couple doctors who I really loved, and I don't think *doctors* as human beings are bad. But the medical establishment and its culture deeply disturb me.

>Eva, I wouldn't be so sure about the broken arm. The local hospital made such bad mistakes when my daughter, then 10, broke her arm that when she got to the children's hospital an hour away (by ambulance) they had to set her arm without painkiller. And last year when I took my son to an emergency care place on Sunday afternoon with a broken arm, they x-rayed it and told him it was a sprain (Monday evening they called and told us to come back because it wasn't).I've had a yearly pap smear from the time I was 18 so I could get my refill of bc pills, despite the fact that my chance of cervical cancer is zero…I love your word "submit."

>This sounds like a powerful book! I don't think you're overreacting. During my last hospital stay, I spent all weekend waiting for a specialist to see me. When he didn't appear by Sunday night, I told the nurse that I wanted to go home and would see him in his office. She got belligerent with me and told me I didn't know what I was talking about. I guess she told someone that I was causing trouble, because the doctor suddenly appeared, after I'd been told he wasn't in the hospital.

>I don't think you're over-reacting. My reaction was so strong I couldn't review this one. Where you came away angry I came away depressed. I wonder if all people who don't blindly "trust" people of superior professional education have the same experience of the medical industrial complex. It's certainly generational. But then, my trusting (sometimes to the detriment of their health) grandparents are remembering family doctors from their childhood who were trained in the old way. Their trust is in a kind of physician which is no longer the norm. And yet may come again? The only heartening part of reading this book was that it was recommended to me by my med-student cousin. It was required reading for his whole first year class.

>Trapunto, it is heartening to hear about med students reading this book. And you're undoubtedly right; from this small sample, at least, it's clear that those of us who don't blindly trust the medical community feel that way because of a bad experience…or two, or three.It seems like such a common-sense thing, to ask doctors to consider the whole person when treating one sick or hurt part of the body.

>I love this book, even though it is saddening and infuriating, because it is so well-written, so clear-headed, so culturally aware on every side, and so free from blame. I have rarely had any luck getting anyone to read it. I think it would make wonderful freshman seminar reading, but no such luck yet.

>Jenny, if I'd known it was a book you wanted people to read too, I'd have…um, not done anything different, because I got a copy as fast as I could after registering how much Kim wants everyone to read it. If I'm ever in a position to make a reading list for a freshman seminar…and I might be yet.